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Thursday, September 11, 2014

humanity first, label LAST

I just rocked my precious Parker before bed. As we swayed back and forth I buried my nose deep into the top of his powdery mist of soft blond hair. He smelled of baby and heaven and bubble bath and hope. It sounded like the hum of outside street lights and I'm eight years old and out past my bedtime and anything is possible. It still is, whispers a voice deep inside me. A calm, hopeful voice that I often try to squash down. But tonight while the warm feel of summer still lingers in the air, I believe those words completely. Anything is possible.Earlier today I was watching a youtube video recommended to me by a dear friend in nursing school. The video featured a woman by the name of Pat Deegan- a disability-rights advocate, psychologist and researcher. She has created "Hearing Voices"; a groundbreaking simulation that helps individuals, students, and professionals understand the challenges faced by people with psychiatric disabilities. During the simulation, participants listen to distressing voices through headphones while completing a series of tasks, such as taking a mental status exam in a mock emergency room. She is changing the way the world helps those with psychiatric disorders. You can see Anderson Cooper's participation and thoughts on the simulation HERE. Deegan was diagnosed with schizophrenia at 25 years old, a fact that blew my mind wide open. Stories like hers remind me that anything is possible. Don't let your mind set limits on what you or your boys can and can't do. You see- we are not so different, people with psychiatric disorders and us. People with autism and you and me. There is no "me" and "them"- we are all humans together. Any of us could be one simple chromosome or traumatic event away from a diagnosis of our very own. Or if not you, your sister, your friend, your child or your spouse. Deegan discusses the profound impact her diagnosis had on her. She felt like she was no longer "Pat"- but that schizophrenia was now the master status in terms of her identity. Her humanity seemed secondary to the fact that she had a disorder. After many years of struggle and learning how to cope, she now realizes that she is so much more than her diagnosis. Reading about Pat's life made me ache with empathy and understanding- that although our circumstances are different- so often the feelings are the same. I believe that holds true for many of us.I thought about an interaction I had years ago with a woman outside of Speech Therapy one day as she waited for her child to finish. She was discussing with me the numerous and familiar-sounding therapies her daughter received and I asked, "Oh does she have autism?" The mother's face wrenched up in pain. "We don't use that word" she replied. I felt as if I had just asked her how much she weighed or how much money her house cost. I then questioned myself- You tell EVERYONE your son has autism. You write a blog that THOUSANDS OF PEOPLE READ in which you frequently mention that he has autism. Maybe this is something that you should keep hidden. I've thought long and hard about our decision to be so forthcoming- and I realized- this diagnosis does not have any power to hurt us unless I give it that power. Unless I assume society will judge us or withhold from us because of it. In fact, the more I talk about it the more I am doing to reduce any stigma or preconceptions associated with it. And sure- I could say it's not me it's society that will judge my child. But actually- I AM SOCIETY so I can also impact society with the message I put out there. We all can.So we are out and proud. I don't for one second think of a diagnosis as something that will limit my sons' future; their future actually depends on their abilities and their desires. We are all human beings FIRST. We are not cancer. We are not schizophrenia. We are not autism or Down syndrome. We are not a divorcee. We are not a lost cause or less than or anything that is slapped on a chart or across our face. We are vast and profound and ritual and ordinary. A pure and precious soul that was born and is loved and grew and failed and tried and succeeded and made it all the way to HERE. This very day. We are simply too big to fit into a tiny little labeled cup. We overflow and spill out into the world. We try each day, and when we suck- we try again. It's awful. It's unbearable. It's amazing. It's perfect just like this. We are humans first, and labels last. You see, a label (or a diagnosis) is important to me because it makes us entitled to benefits like Speech Therapy through our insurance. It lets school folks know that my children need to be taught differently. It provides teachers with patience and understanding. It let's society know things they may not understand just by looking at my boys. Things like- don't touch me, it makes me uncomfortable. I have a hard time paying attention. I am sometimes triggered by crowds or loud or new situations.They are not autism. They are precious little boys, frequently covered with dirt, jumping on the bed with glee and teaching me how to really live and love life.

12 comments:

Beautiful photos of your boys! I completely agree that being open about autism reduces the stigma. That is why we let our son know about his Asperger's at a young age. We felt like keeping it a secret to one day drop on him would make it seem like autism was something shameful to keep hidden. We all have strengths and challenges, and some of his have a special name. Better to make it a casual part of our everyday language - it's just one small part of life.

Everyone has labels. It's how we, as humans, identify things. But when those labels become the identity, that's when they are bad. As always, your words are almost perfect.And are those big boy underpants I see on Parker??? :-D Much love and big hugs!

Hi Friend. "Their futures depend on their abilities and desires" I couldn't agree more. I had the thought early on with Jace that who he becomes is not up to me. He already is. God gave me this little person & my job is not to make him into anything. That is out of my control and way above my pay grade. My job is to raise him and help him discover who he already is and what purpose God put him here to serve. So, I help him acquire tools - an education, a kind heart, love, confidence - whatever will help him on HIS journey. His journey is not mine. I'm just incredibly honored to help him on his way. So much love & happiness to you sweet Momma. xoxoxo Miracle

Dear Chrissy, here's a reader saying hello from Switzerland.You are heard and liked here, I'm thinking of Greyson and Parker whenever I see a garbage truck. I like you and your family and your perspective on life, children, marriage. Thank you for being so open, honest and true. All the best to you!

Yes, yes, yes!!! People ask me all the time if my boys know they have Aspergers, as if knowing that there's something "wrong" (ahem ... different, please!) with how they function is detrimental to their being. Yes. They are 15 and (almost) 9, and certainly know they have Aspergers. Just like they know I have psoriatic arthritis and OCD. Just like they know they have long hair and stinky feet. Just like my other son knows he has depression and anger issues and one of my daughters knows she has a thyroid disorder. It is not who they are, but what they live with. It is not a secret. It is not something bad. My fifteen year old doesn't mind being called an Aspie, because, as he quips, anything with pie in it has to be good. This is why our "Kiss My Aspie" car magnet ( a joke, as my 15 year old doesn't allow himself to be hugged or kissed), has been peeled away to read, simply, pie. As with all of our quirks, we have a sense of humor about it all.